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Today we have an interview with an awesome Health Activist – Marla Murasko – who you may recognize from last month’s Advocating For Others webinar. This interview is a look into Marla’s advocacy and hints at our September topic: Working and Health Activism. Marla started her own online community for Mom Entrepreneurs who are also passionate about Special Needs causes. When she’s not focused on Health Activism and caring for her son Jacob, Marla enjoys taking time out to work on her business – another one of her passions. It’s been wonderful getting to know Marla and to hear how became a Health Activist and how she continues to advocate for her son and provide a support network for other working moms.

WEGO Health: Hi Marla, thanks so much for taking the time to share with us. You’re doing so many wonderful things for the Special Needs community and I’m excited to learn more about your work and your passion! Can you tell us a little bit about your background and how you became an advocate for the Special Needs community? What made you get involved in the first place?

Marla: I have always been involved in the special needs community even way back to my high school years. I was a one-on-one buddy for a child with Down Syndrome during my study hall period, volunteered for Special Olympics and was Regional Director for 4 years of the Somerset County Tournament of Champions. So my passion for helping children with special needs started a long time ago.

However, since the birth of my child 5 ½ years ago, who was diagnosed when I was 4 months pregnant with a congenital heart defect and then diagnosed at birth with Down Syndrome it brought this passion closer to my heart. Now it was my son who I was advocating for, so it got more personal for me.

WEGO Health: Your Health Activism really started with self-education, research, and by becoming an empowered patient – can you tell us more about that? How did you empower yourself and what tips do you have for other women (and men) who may be going through a similar experience?

Marla: My health activism truly began the day my son was born. When my husband and I learned of my son’s heart issue during the ultrasound, we were told that the percentage of him having Down Syndrome due to this diagnosis of his heart was extremely high and the only way to confirm that he would be born with Down Syndrome was to do an amniocentesis. We declined that test for personal beliefs. However, to be respectful of my husband’s wishes to not stress myself out for the remainder of the pregnancy by going online and doing research, I truly waited until he was born. Even after his birth it was still hard to digest the fact that he had DS, I went through a short period of time where I went from denial to grief. Then had the opportunity to have a very personal conversation with a hospital chaplain who helped me to realize that I was going to be my son’s biggest advocate. What I would like to say to parents of special needs children is we all have been there, we all have asked the same questions, why him, why us, what are people going to say. That’s normal, that’s part of the grieving process. But that the greatest gift you can give your child is to advocate, educate and take part in their lives. You are going to be their voice. So become as knowledgeable as you can about their rights, your rights, the diagnosis, treatments, insurance, specialists, etc. The more informed you are, you can make better decisions with regards to the care of your child.

WEGO Health: I know that you wrote a book, Jacob’s Journal – My Journey Home – can you tell us a bit about what inspired you to write it and what advice you’d offer other Health Activists who may want to get involved with writing a book?

Marla: Jacob’s Journal – My Journey Home was created through a journal that I had kept at the hospital, of the information that I was being told by the medical profession, the feelings and experiences I was going through and basically to document Jacob’s journey as he grew and progressed. Initially there wasn’t any intentions of writing a book, but through my journey I felt that the information and experiences I was having may be helpful to other parents and decided to share our journey. I did a lot of research as I documented different medical terms, associations, etc. My only advice about writing a book is be patient and passionate about what you are writing about. It may take a while to finish it may not, but you want it to be genuine.

WEGO Health: How did you get involved with your organization “Special Moms Entrepreneur Club”? What was the idea behind starting it?

Marla: SpecialMoms Entrepreneur Club was created out of a need I felt in the special needs community that wasn’t being addressed. As a mom, business owner, entrepreneur I was involved in a mom entrepreneur online community that provided great business information. But what I realized was that only a handful of these members were mothers of special needs children and business owners as well, so it made it hard for them to be able to relate to my particular situation of managing both. However, I felt that when I joined special needs communities it was hard for them to relate to my needs of support from a business perspective. So without having to go to different communities for both personal and professional information when it comes to being the mother of a special needs child and a business owner, I decided to create my own community that would marry the two together and provide a venue to empower mothers of special needs children to follow their dreams of also becoming business owers.

WEGO Health: What made you take your crusade online? What’s the best part about leading your community?

Marla: The best communities are online. You don’t have to be local to other mothers to find a common bond. You can be from two different states and have the same passions and circumstances, so taking it online just seem like the most naturally way to go.

I love leading my community because I love to empower other women, I love to advocate for the special needs community and what best way to do that but through my community.

WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?

Marla: I think my proudest moment was the completion of my book, becoming a first-time author not many can share that title.

My most challenging has been the public school system, and getting my son in the right educational environment with the right support system to make him successful.

WEGO Health: Is there anything you wish the general public knew about the Down Syndrome or the Special Needs Community?

Marla: That we are parents also, we just may have a few more struggles than most. Engage us, engage our children. The world will truly be a better place if everyone just took the time to understand that our children are not different just beautiful and unique.

WEGO Health: How do you raise awareness? What can others do to get involved?

Marla: I raise awareness through my SpecialMoms Entrepreneur community, blogging, organizations I am involved with from being a member to being on the Board. Just get involved with something you are passionate about.

WEGO Health: What next for your community? What are your goals for your organization and what are you most looking forward to?

Marla: I want my community to grow, that it becomes a true source of reference that is being recommended by individuals, organizations and that businesses want to be acquainted with it because they see it as a valuable tool for the special needs community.